SCI Forum Reports
Parenting
November 11, 1995
"I'm a T7 para, and this has been one heck of a ride," said Laura, mother of a toddler and one of 6 panelists who gathered to share their experiences with parenting "on wheels".
"My daughter's a very active child," Laura said. "One thing I noticed after I first had her was this overwhelming feeling of being disabled, which I thought I'd gotten over--I was injured 16 years ago. But suddenly I had this baby, and I was faced with all these limits. My body hurts all the time...every joint in my arms seems to be chronically inflamed.
"At every developmental stage, there's something different I have to figure out. Before she got head control, I had to figure out how to pick her up. Now I've taught her to come up and lay over my lap, and I'll pick her up by the back of her pants. She's learning ways to get up on Mommy without Mommy's help, which will be great for my arms!"
Steve, who has paraplegia, and his wife, Beth, said they dressed their children in overalls when they were little so their father could pick them up by the straps in back. "We ended up putting the changing table on blocks, so Steve could roll under it," Beth said. They topped the table with a cushioned pad from a boating supply store.
"I had a hard time finding a crib that would work for me," Laura said, because most cribs use foot switches to release the side. Shannon, another mother with a toddler and paraplegia, said she finally found one with a switch she could operate with her forearm.
Mark, a recent father with tetraplegia, said he has found parenthood a bittersweet experience. "I don't have to change dirty diapers or wake up for those midnight feedings, but there are a lot of things I don't get to enjoy," he said. "My wife does the hugging and holding, picking him up when he's in need. But not knowing if we could ever have kids, this has been a blessing. I would do it all over again in a heartbeat."
Mark's wife, Lisa, said Mark used a cloth carrier when his son was an infant. "As he got heavier, we had to pad the sides. Now we use a backpack on the side of the chair. Up until the last few weeks, we'd extend the seat belt on Mark's chair, but he (their son) is now able to ride around without a seat belt." Their son likes the buttons on Mark's power chair, especially the "power" and "recline" controls.
"He doesn't even realize there is something different in his life," Mark said. Unfortunately, that will probably not always be the case. "I've thought about what it's going to be like when he's in school, and the teasing" by other children, Mark said. One approach for preventing trouble down the road is finding ways to make the chair fun. "One thing I do is tie a wagon on the back of the chair and give them rides." Jerry, who has paraplegia and two teenagers, said he always tells children the truth when they ask why he can't walk, "since for so many years, disability wasn't talked about."
Beth and Steve's children seemed to adapt well to having one parent in a wheelchair. "When I was out with them, they'd run around, but when Steve was out with them, they stayed close by," Beth said. "We never felt uncomfortable about him being alone with them." Their daughter learned to pull her pants up "one-handed like her dad, leaning on a wall," and their son learned to empty his bladder "by pounding, like Daddy," she said.
When it comes to disciplining the children, Steve said, "they're going to run places where you can't go, but sooner or later they're going to learn about your memory. Eventually they learn that they're going to suffer with the knowledge that something's coming, and it's better to deal with it now than wait."
"Because you can't be there as much, you develop senses that are a little more acute," Jerry added. "The noise, or the lack of noise...over time you develop a sense of what's going on in different parts of the house."
Several of the parents mentioned worrying about their children's safety. Laura said it took her a long time to go out in public with her daughter, "for fear that something would happen...that someone would just take her off my lap. I started wrapping my purse around her, just as an extra precaution. Now that she's walking, she doesn't want me to hold her hand. I'm teaching her to hang on to the back of the chair...that's 'cool' to her, she'll push Mommy and stay with me that way, and she feels like she's got some of that toddler independence that she desires.
"I'm going to struggle, I know, with letting my kid do things, because I'm afraid she's going to get hurt. I don't want her to get injured."
"My son played football," Jerry said. "That's what put me in a chair. People asked, 'how could you let him?' But I was doing something I enjoyed when I got hurt."